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Researchers Offer Jet Lag Advice In Return For Data About Your Sleep

NPR Health Blog - Thu, 05/12/2016 - 12:42pm

What time is it?

Doug Griswold/Bay Area News Group/MCT via Getty Images

Companies like Google and Fitbit gather all kinds of data on how people behave. Why couldn't scientists use an app to do the same thing?

Two years ago, mathematicians at the University of Michigan released an app called Entrain to help people get over jet lag. Users entered data on their time zone, when they sleep, what kind of light they're exposed to, and the app gives them an ideal schedule to recover.

If app users consent, the data get sent back to the researchers. The trade-off — accurate data for useful jet lag advice — motivates people to send in accurate data, says Olivia Walch, a doctoral candidate working on the project. "It's the path forward for academics," she says.

The researchers collected data from more than 5,000 users of the Entrain app from 100 countries. The analysis was published last Friday in the journal Science Advances.

Among the findings: Women schedule around 30 minutes more sleep than men; people who spend time in outdoor light tend to go to bed earlier and sleep more than people who spend most of their time in indoor light; and sleep patterns converge as people age, suggesting that there's a narrower window for when they can fall and stay asleep.

The authors and others say the work shows their app can accurately collect sleep data.

The approach has potential, says Daniel Forger, professor of mathematics and computational medicine and bioinformatics at the University of Michigan and one of the authors. "You could call a million people up, most of those people won't answer your survey, and spend millions of dollars doing this," he says. "But what was so remarkable was that — for almost no amount of money and almost instantaneously — we could collect this kind of data."

Typically, sleep researchers get data from controlled lab environments or large studies with subjects reporting back on what they did, says Jamie Zeitzer of the Stanford Center for Sleep Sciences and Medicine. An app bridges the two, he says.

"This is real life, this is what's actually happening and ... especially in something like sleep, there's a dichotomy between what people remember they do ... and what they actually do," Zeitzer adds. "This fits quite nicely into that gap and helps us understand actual behavioral patterns."

Other researchers wonder about generalizations drawn from the data. Among them: Diane Lauderdale, chair of the department of public health sciences at the University of Chicago and a sleep researcher, who says that while the patterns in this paper are plausible, she's not sure the data support some of the findings.

Her concern is that people who use the app — they have a smartphone, agree to send data back, presumably travel quite a bit — may not be representative of the people in their countries.

"There's a general challenge as we move into big data sources about how to weigh the attractiveness of using these ... to answer questions ... that we have not been able to answer and the real limitation that we don't really have control over, or knowledge about, exactly who we're getting the data from," she says. "It's not just unique to this study."

Michigan's Walch agrees, and she says she has spent nights stressing out over this potential selection bias. She points out the patterns they describe match what sleep researchers have previously established in more controlled studies.

"The very first wave of data analysis we did, I was almost distraught," she says. "A lot of our things are confirmatory, and I came to realize, 'No, this is great that they're confirmatory of these smaller studies with fewer people, because it tethers us to reality.' But then, stepping back, it's still a problem."

She says she hopes the spread of the technology and improvements in its ease of use will help.

Ida Sim, co-director of biomedical informatics at the University of California, San Francisco Clinical and Translational Sciences Institute, shares Lauderdale's concern about selection bias and adds that big data researchers have to go out of their way to get a random representative sample.

They need to hold people's hands through tech problems, and motivate them to report good data, she said. As an example of something that could meet that standard, she points to the Precision Medicine Initiative from the National Institutes of Health, which aims to recruit 1 million or more people in the U.S. to study treatments that take into account different genes, environments and lifestyles. The president called for $215 million in 2016 for this program.

Sim says another issue is making sure that researchers are measuring the same thing. For instance, an app that reports a blood glucose value isn't very useful to other researchers unless they know whether it's fasting blood glucose level, a random level, an average over the past week or a single reading.

"It's like if people are speaking different languages, and they all use a slightly different word ... and it turns out everybody's talking about the same thing, but the words are slightly different and so communication is impeded."

She co-founded a nonprofit called Open mHealth that aims to develop open common standards, taking inspiration from the Internet's open architecture, as explained in a 2010 article in Science.

As for the study on sleep patterns, she says "the findings weren't that earth-shattering, but the methods and approach are illustrative" and that we can expect more big data research like this in the future.

Alan Yu is a freelance reporter in Hong Kong who contributes regularly to the South China Morning Post. You can follow him on Twitter: @Alan_Yu039

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Look, Ma! No Mitochondria

NPR Health Blog - Thu, 05/12/2016 - 12:11pm

These mitochondria, in red, are from the heart muscle cell of a rat. Mitochondria have been described as "the powerhouses of the cell" because they generate most of a cell's supply of chemical energy. But at least one type of complex cell doesn't need 'em, it turns out.

Science Source

Scientists have found a microbe that does something textbooks say is impossible: It's a complex cell that survives without mitochondria.

Mitochondria are the powerhouses inside eukaryotic cells, the type of complicated cell that makes up people, other critters and plants and fungi. All eukaryotic cells contain a nucleus and little organelles — and one of the most famous was the mitochondrion.

"They were considered to be absolutely indispensable components of the eukaryotic cell and the hallmark of the eukaryotic cell," says Anna Karnkowska, a researcher in evolutionary biology at the University of British Columbia in Vancouver. Karnkowska and her colleagues describe their new find in a study published online Thursday in the journal Current Biology.

This is a light micrograph of the microbe that evolutionary biologists say lives just fine without any mitochondria.

Naoji Yubuki/Current Biology

Mitochondria have their own DNA, and scientists believe they were once free-living bacteria that got engulfed by primitive, ancient cells that were evolving to become the complex life forms we know and love today.

For decades, researchers have tried to find eukaryotic cells that don't have mitochondria — and for a while they thought they'd found some. One example is Giardia, a human gut parasite that causes diarrhea. It was considered to be a kind of living fossil because it had a nucleus but didn't seem to have acquired mitochondria. But additional studies on Giardia and other microbes showed that actually, the mitochondria were there.

"It turned out that all of them actually had some kind of remnant mitochondrion," says Karnkowska, who notes that mitochondria perform key jobs in the cell beyond just generating power.

A biggie is assembling iron-sulfur clusters for certain proteins, which is thought to be a mitochondrial function that's really essential. So even if a microbe powers itself in a different way and has a limited form of the organelle that isn't the same as the mitochondria found in people, Karnkowska says, "it's still a mitochondrion and it has some important function for the cell."

That kind of vestigial mitochondrion is what she expected to find when she was a researcher at Charles University in Prague and started investigating a particular gut microbe that had been isolated from a researcher's pet chinchilla.

After she and her colleagues sequenced the gut microbe's genome, however, they found no trace that it made any mitochondrial proteins at all. "So that's a great surprise for us," she says. "That should theoretically kill the cell — it shouldn't exist."

What they learned is that instead of relying on mitochondria to assemble iron-sulfur clusters, these cells use a different kind of machinery. And it looks like they acquired it from bacteria.

The researchers say this is the first example of any eukaryote that completely lacks mitochondria.

Michael Gray, a biochemist at Dalhousie University in Halifax, Nova Scotia, says the researchers have made a "compelling" case that they have a bona fide eukaryote without any vestige of a mitochondrion; he calls the finding "unprecedented."

"The observation is significant, in that it clearly demonstrates that a eukaryote can still be a eukaryote without having a mitochondrion," he tells Shots via email.

However, the results do not negate the idea that the acquisition of a mitochondrion was an important and perhaps defining event in the evolution of eukaryotic cells, he adds.

That's because it seems clear that this organism's ancestors had mitochondria that were then lost after the cells acquired their non-mitochondrial system for making iron-sulfur clusters.

"This is not the missing link of eukaryotic evolution," agrees Mark Van Der Giezen, a researcher in evolutionary biochemistry at the University of Exeter in the United Kingdom.

Still, he says, it is an example of how flexible life is.

"It lives in an area without oxygen and therefore can get rid of a lot of biochemistry that you and I would need in our cells to survive," says Van Der Giezen. "This organism managed to adapt in such a way that it could lose an organelle, which every textbook will tell you is an essential feature of eukaryotes. That's pretty amazing. It shows you that life is extremely creative in finding a way to eke out an existence."

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

DIY Blood Tests? There's A Downside To Ordering Your Own

NPR Health Blog - Thu, 05/12/2016 - 11:10am

"I'm afraid there's a growing sense that the path to health is through testing," says Dr. H. Gilbert Welch, a Dartmouth Institute internist who has written books on the pitfalls of overdiagnosis. Encouraging the worried well to order their own blood tests feeds that mindset, he says.

TEK Image/Science Photo Library/Getty Images

One aspect of the downfall of Theranos is the blood-testing company's leveraging of the Do-It-Yourself ethos to promote its product. Theranos provides consumers with a menu of more than 200 low-cost diagnostic blood tests for an array of drugs, ailments, deficiencies and diseases.

It's legal to order blood tests without consulting a doctor in about two dozen states. But should you?

Theranos and some other medical labs say yes, while critics argue that's a recipe for disaster.

Here's Theranos' founder, Elizabeth Holmes, at TEDMED in 2014, lacing her stemwinder of a presentation with the ideals of patient self-empowerment.

"My own life's work in building Theranos is to redefine the paradigm of diagnosis away from one in which people have to present with a symptom in order to get access to information about their bodies," she said, "to one in which every person, no matter how much money they have or where they live, has access to actionable health information at the time it matters."

She also pitched the crowd an absurdity:

"(T)oday, I can go buy a deadly, exotic animal, a venomous viper, a military truck or armored vehicle. I can buy a tank ... but I can't order a blood-based pregnancy test, or an allergy test. Because that could be dangerous."

An inspection by the federal government last year found that deficiencies at Theranos' California lab could "pose immediate jeopardy to patient health and safety." The company is currently waiting for the Centers for Medicare & Medicaid Services to render a final decision on whether it will lose its license to operate its labs. But, for now, Theranos still does tests at its wellness centers in dozens of Walgreens and other locations in Arizona, plus one in California.

Theranos isn't the only company marketing blood testing to the worried well. WellnessFX has a partnership with the longtime medical laboratory Quest Diagnostics; consumers in all but seven states can use the WellnessFX website to order their own "biomarker" tests online, along with more traditional tests of thyroid function, blood sugar or testosterone.

Like Theranos, WellnessFX has baked into its marketing campaign the ideals of patient access and independence.

"A lot of the data that can be used to help understand what is best for the patient — historically, that's always been the clipboard that's been turned around facing the physician ... and never really been shown to the patient," said WellnessFX co-founder Brent Vaughan in a 2013 promotional video. "Because there's always been this belief that patients can't understand — or they don't want to understand — this information."

A Growing Trend

Last year, LabCorp, a behemoth in medical diagnostics, dipped a toe in the waters of DIY diagnostics by allowing Arizona consumers to order their own tests. LabCorp CEO David King said in an email that the company's market research shows a "significant percentage" of consumers are interested in initiating tests on their own. The company plans to expand the service into other states later this year.

"As consumers bear more of the cost of health care out of pocket, they should be, and are becoming, increasingly engaged in managing their health care," King said. "We absolutely support them in doing so."

Last April, when the state of Arizona enacted its law — pushed by Theranos — allowing consumers to order their own tests, the bill passed in the House 60-0 and the Senate 26-2. Sen. Steve Farley, a Democrat, was one of the "no" votes. He isn't surprised at Theranos' unraveling.

"Really, what we were being asked to do in that bill was to allow our constituents in Arizona to become beta testers, and use their own bodies as the tool of that beta testing," he said. (Theranos declined to comment.)

The debate over the wisdom of cutting doctors out of the diagnostic loop has been going on for years. Some academics have been vocal about their reservations. Dr. Norman Paradis, an emergency medicine physician and professor of medicine at Dartmouth who has consulted for diagnostic startups, calls the model of offering a wide assortment of tests — as Theranos does — a recipe for disaster.

"If you simply run medical tests in large numbers of people who don't have the signs and symptoms of a certain disease, then many of the results you get will be false positives," he explained.

And those patients could then wind up going farther down the rabbit hole of more invasive, potentially harmful tests and treatment.

Paradis said getting medical students and even medical residents to appropriately order tests is difficult enough. "So if it's difficult for them, it's even harder for the layperson."

Dr. H. Gilbert Welch, an internist at the Dartmouth Institute and author of several books on the problems of overdiagnosis, thinks getting your own blood tests is part of the larger negative trend — testing people who aren't really sick.

"I'm afraid there's a growing sense that the path to health is through testing," he said. "But you don't test yourself to health. Health is much more about how you move, what you eat and finding joy and purpose in life."

WellnessFX has taken concerns about false positives into account, said Dr. Murdoc Khalegi, an emergency medicine physician, and the company's medical director. He said the company works with physicians to make sure the tests it offers are not susceptible to inaccurate results.

"We work very hard to [offer tests] that are something a consumer can understand, like having elevated cholesterol or blood sugar," Khalegi said. "We encourage all of our results to be shared with physicians. But to restrict people from even having that information, which is the way it currently exists in some settings, would be unfortunate. People should be aware if they have certain health risks."

The Center for Democracy & Technology's Michelle De Mooy, who has researched the issues of privacy and transparency in health care, dismisses the argument that patients can't make knowledgeable decisions about when to get tested. She said the issue of false positives is "pretty reasonably addressed" with warnings.

Both she and Khalegi point to the high cost of health care as one reason to give patients more direct access to diagnostic tests. It's often cheaper for the patient, they say. Having a health insurance policy with a high deductible, or having a lack of access to transportation or child care are reasons people might choose to get tests in the most efficient, least time-consuming way possible.

"The economic disparity question is one that the health care establishment tends to gloss over," De Mooy said.

One Patient's Story

Amy, who lives in Santa Cruz, Calif., and asked us not to use her last name, to protect her medical privacy, explained why she was motivated to go online last year to order her own test for iron-deficiency anemia, though she was feeling healthy.

The U.S. Preventive Services Task Force makes no recommendation one way or the other regarding testing for iron-deficiency anemia among people who are asymptomatic. But Amy is vegan, and some of her friends persuaded her to seek out testing because cutting meat and dairy from your diet can increase the risk of iron-deficiency anemia.

And because of her health policy's high deductible and what she said were bad experiences with insurance companies, Amy didn't want to go through her health insurer.

Her iron level came back low, according to the test result. But rather than start taking an iron supplement, make changes to her diet or take other action on her own, she made an appointment with a doctor, where she mentioned she'd donated blood a week before the test. Amy hadn't known this would deplete her iron. And because her other numbers were fine, the doctor told her not to worry.

The whole experience — the blood draw notwithstanding — was painless and reassuring, Amy said.

"I liked being able to answer my own questions and to go to the site and pick which things I was curious about. I like being able to do it independently, since I don't have a regular general practitioner I go to."

In some ways Amy fits the profile that both advocates and opponents of self-testing point to: She had no symptoms of anemia and got a test that wound up being unnecessary. But she also felt she had a psychological need to know, and a financial need to pursue the answer cheaply.

Murdoc, of WellnessFX, said that while he defers to official guidelines on medical testing, Amy probably did the right thing in checking for anemia.

"It's a very cheap blood test," he said.

This story was produced by KQED's daily health and technology blog, Future of You. The blog's host and editor is Jon Brooks.

Copyright 2016 KQED Public Media. To see more, visit KQED Public Media.
Categories: NPR Blogs

Selling Health Insurance Across State Lines Sounds Good, But Is It?

NPR Health Blog - Thu, 05/12/2016 - 10:49am

Presidential candidates like to float solutions to long-standing problems. Making those solutions stick is another thing altogether.

When it comes to health care, the enactment of the Affordable Care Act, rather than tamping down chatter about how to insure people, seems only to have spurred more of it.

But you know what? There's a reason some problems are long-standing. They may have no easy solution. Or the solution isn't politically feasible. Or there's a solution that sounds good on the campaign trail but isn't likely to actually work.

In the first of a series of videos about health policy promises that sound like a good idea but maybe aren't, Julie Rovner explores why increasing competition in health insurance by allowing sales of policies across state lines might not be such a hot idea after all.

One of the seven planks outlined by Donald Trump in a health plan his campaign released in March calls for interstate sales of insurance.

Watch and listen as Julie explains why selling insurance across state lines isn't all it's cracked up to be. Spoiler alert: Georgia, Maine and Wyoming already allow it, and insurers haven't taken advantage of the option.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
Categories: NPR Blogs

Meet The Tiny Critters Thriving In Your Carpet, Kitchen And Bed

NPR Health Blog - Wed, 05/11/2016 - 10:57am
Deep Look YouTube

With the weather warming, it's the season for spring cleaning. But before you reach for the broom and mop, consider who else is sharing your home. The variety of uninvited guests in your dustpan may surprise you.

A recent study published in the journal PeerJ took up the challenge of cataloging the large numbers of tiny animals — arthropods — that live in modern human dwellings. In 50 houses in and around Raleigh, N. C., the research team found about a hundred different species of arthropods in each home. The tally included familiar types — like flies, spiders and ants — but also some species that are less well known, such as gall wasps and book lice.

Grains of uncooked rice dwarf this book louse. Though book lice thrive in most human homes, they largely go unnoticed.

Josh Cassidy/KQED

"Even as entomologists we were really surprised," says Michelle Trautwein, now assistant curator of entomology at the California Academy of Sciences in San Francisco. She led the research team, which was based at North Carolina State University in Raleigh.

"We live in our houses all the time," Trautwein says, "so we thought we'd be more familiar with the kind of things we'd come across."

It didn't seem to matter how much the human residents cleaned, she says. "There was a surprising level of biodiversity."

The scientists donned headlamps and knee pads in their hunt for arthropods — creatures that have exoskeletons, multiple appendages and segmented bodies. They collected flies from windowsills, spiders from under sinks and took samples of dust from corners, carpets and rugs — combing through it to find speck-sized creatures.

Entomologist Michelle Trautwein searches a kitchen windowsill, a common place to find arthropods that wandered in from the surrounding environment.

Josh Cassidy/KQED

Any arthropod they turned up was examined by a team of entomologists, using both genetic analysis and traditional visual identification under a microscope.

Among their findings: Homes with kids and pets tended to have the largest variety of these diminutive lodgers. And there were more different species of arthropod on lower floors of a building than higher floors. Common rooms, carpeted rooms and rooms with more windows and doors to the outside seemed to have a greater diversity of micro-guests.

Most of the different types of arthropods they turned up were essentially harmless, and just wandered in from outside.

"The vast majority of things we found don't bite or sting or feed on our food," Trautwein says. "Most of them have no effect on our daily lives."

And many of them live in house dust — a collection of dirt, lint, pollen, hair, pet fur, and flakes of skin shed by humans and pets. Turns out that constant rain of skin is a great source of food for one particular roommate — the house dust mite.

Dust mites are arachnids — small relatives of spiders. Lined up end to end, five dust mites would fit between two millimeter marks on a ruler. Barely visible to the naked eye, dust mites under the microscope look like translucent jellybeans with legs. They don't hunt; they just munch on the steady supply of skin flakes we all slough every day.

Dead skin is mainly composed of keratin, a tough structural protein that also gives shape to nails and hair. It's not a particularly nutritious food, but it is abundant. Dust mites use powerful enzymes to break down the keratin and digest it. After that the mites produce waste pellets at a prodigious rate. Along with the exoskeletons the mites shed as they grow, the poop becomes part of the dust in our homes.

Those mite leavings can affect human health; the droppings contain enzymes that can provoke an allergic reaction in the lungs of some people who inhale the dust. Research suggests allergies to dust mites may be a major contributor to childhood asthma.

Dust mites didn't start out in human homes. A few years ago, scientists at the University of Michigan found genetic evidence that one type of common dust mite had a parasitic ancestor that clung to birds. It may have gone on to colonize warm, humid nests, too, feeding on sloughed skin and feathers — and some descendant ultimately wandered into the dusty, human nests we call home today.

If the idea of mites in your house give you the creeps, you can somewhat reduce their numbers Trautwein says, by vacuuming and mopping often, ditching the wall-to-wall carpets, and avoiding humid climes — dust mites are rare in the desert. The American College of Allergy, Asthma and Immunology advises regular use of a vacuum with a HEPA filter, among other measures, if somebody in your home suffers from dust allergies.

Or, you don't have these allergies, you might just relax — and realize you can't rid your home of all arthropod visitors.

This Storage Mite is smaller than a grain of sand.

Josh Cassidy/KQED

"We are very much a part of the natural world and even our homes that may seem more sterile are not exempt from that," Trautwein says. She sees that as part of life's adventure.

"When we think about wild areas," she says, "it's exciting to think that even our homes are still these unexplored areas waiting for more discoveries to be made."

This post was produced by our friends at Deep Look, a wildlife video series from KQED and PBS Digital Studios that explores weekly "the unseen at the very edge of our visible world." Josh Cassidy is lead producer/cinematographer for the series.

Copyright 2016 KQED Public Media. To see more, visit KQED Public Media.
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State Insurance Mandates For Autism Treatment Fall Short

NPR Health Blog - Wed, 05/11/2016 - 10:15am

Early treatment for autism is key to making the most of the intervention, researchers say.

Marc Romanelli/Blend Images RM/Getty Images

Forty-four states and the District of Columbia have laws on the books requiring health insurers to cover autism treatments. But research evaluating these insurance mandates suggests the efforts are failing to help many children get needed therapy.

The state requirements have increased the number of children by about 12 percent, according to the research presented Wednesday at a major conference on autism spectrum disorder.

There's been a push for health insurers to better cover often-pricey autism treatments, especially applied behavioral analysis, a type of behavioral modification therapy.

Those efforts come as autism rates have ballooned. In 2014, the most recent year for which data is available, the Centers for Disease Control and Prevention estimated that 1 in 45 children are on the autism spectrum, with symptoms ranging from communication difficulties to repetitive or obsessive behaviors. In 2000, the rate was 1 in 150.

Researchers found that the state mandates, which apply to coverage available on the individual market and some group and employer plans, led to about 12 percent more children getting some kind of treatment for autism. But that's not nearly enough when compared with the number believed to have the condition, they say.

"These numbers are orders of magnitude below" the CDC's autism estimates, said David Mandell, one of the researchers and the director of the University of Pennsylvania's Center for Mental Health Policy and Services Research. "It suggests that a lot of commercially insured kids with autism are not being treated through their insurance."

The shortfall may have significant health consequences, said Daniele Fallin, who chairs the Johns Hopkins University department of mental health and directs Hopkins' Wendy Klag Center for Autism and Developmental Disabilities. For children, it's important to get treatment as soon as possible. If that doesn't happen, the condition will become more complicated — and more costly — to treat in the long run.

"It's a big concern any time you see this kind of treatment gap," said Fallin, who wasn't affiliated with the study.

The researchers used insurance claims data from 2008 to 2012 compiled by the Health Care Cost Institute, a nonprofit organization that focuses on price transparency. They divided the case files of 154,000 children into four groups.

First, they took states with insurance mandates and split the files between children whose coverage was affected and those whose was exempt. Then, in states without insurance mandates, they divided children with commercial insurance who would have been affected had there been a state mandate, and those who would not.

The study did not include Medicaid plans. The claims data was pulled from three large insurance companies in all 50 states plus the District of Columbia.

The researchers then analyzed how many autism-related treatments were billed to insurance, controlling for factors like age, sex, health plan type and calendar month. They found that having a mandate in place increased the level of treatments billed by an average of about 12.2 percent — 9.9 percent during the mandate's first year, 16.6 percent the second year and 17.2 percent in subsequent years.

But questions persist beyond whether patients got some form of care. The researchers are still teasing out what kinds of treatments children who used their insurance actually received. And, Mandell said, it leaves open how good that care actually was.

The takeaway is that insurance mandates are "necessary but not sufficient" for helping people get needed therapies, he said.

That makes sense, said Alycia Halladay, chief science officer at the Autism Science Foundation, which helps fund research. Requiring health plans to cover autism therapies was important as a first step, she argued. But more needs to be done.

"You can't rely on these mandates alone. You can't say, 'OK now, everything's hunky-dory, and everyone's being served the right way,' " she said.

There are a few possible reasons the coverage requirements aren't always translating to people getting treatment.

Even if insurers have to cover care, there is wide variation in how generous the coverage is. Plans can argue that certain services like speech and occupational therapy as well as applied behavioral therapy aren't necessary. Or insurers can require higher cost-sharing, or reimburse at a low enough rate that providers don't participate. Also, not all mandates are equal — some states cap coverage, allow ceilings to the number of visits or limit the age range of beneficiaries.

Even when a mandate is in place, it's often unclear what insurance plans are actually required to pay for, said Halladay. Plus parents of autistic children may not realize what services are covered, she added.

Then there's also the fact that, compared to the need, not enough doctors are familiar with autism treatments, noted Mandell, who co-authored a qualitative study published last November in the journal Autism. The research presented Wednesday will appear this summer in JAMA Pediatrics.

"There are long waiting lists for people to get medical referrals for their autism-related problems. There are wait lists all over the place. And that's because there aren't enough people trained," Halladay said. "It's not an easy problem to solve."

That could have cost implications, too.

Insurance plans have argued that mandates could drive up premiums. So far, they've resulted in increases of about 1 percent, according to the National Conference of State Legislatures, but those could grow if plans cover more services or autism rates keep climbing. That could also color whether other companies not included in the mandates choose to cover these services. For instance, the laws don't affect large companies that are self-insured, though some, like Home Depot and Microsoft, provide autism treatment coverage.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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When Time Behind Bars Cuts Addiction Treatment Short

NPR Health Blog - Wed, 05/11/2016 - 9:16am
Joseph Daniel Fiedler for NPR

Michael Burghardt couldn't sleep. His legs were shaking, his bones ached and he couldn't stop throwing up.

Burghardt was in the Valley Street Jail in Manchester, N.H. This was his 11th stay at the jail in the last 12 years. There had been charges for driving without a license, and arguments where the police were called. This time, Burghardt was in after an arrest for transporting drugs in a motor vehicle.

Burghardt, 32, has been taking methadone for 10 years to help his recovery from heroin addiction. Each time he's been in the jail, he says, he hasn't been able to continue with the medication-assisted treatment. He hasn't been able to taper off the medicine either, which means he's had to go straight into detox.

Four times after he was released from jail, Burghardt says, he relapsed and started using heroin again.

Methadone is a long-acting narcotic that can help people stay off heroin. But the physical symptoms of withdrawal from methadone can last longer than those from the drug it replaces. "You feel like you're basically dying," Burghardt says.

The World Health Organization recommends that incarcerated people like Burghardt continue methadone treatment. And if Burghardt lived in most other Western nations – or Iran, Malaysia or Kyrgyzstan for that matter — he likely would be able to do so.

But in the United States, the only people likely to receive methadone or other opioid- replacement drugs, such as buprenorphine, while incarcerated are pregnant women.

That's the case at the Valley Street Jail. "It's for the safety and health of the child more than anything," says Denise Ryan, the jail's administrator for health services. Withdrawal from opioids can cause miscarriage.

According to a survey published in the journal Drug and Alcohol Dependence, more than half of the nation's prison systems offer methadone to people behind bars. But most restrict access to pregnant women and, occasionally, those with chronic pain.

Far fewer jails and prisons provide patients with buprenorphine, another opioid replacement drug. Drugs like methadone and buprenorphine are "summarily stopped when people are incarcerated," says Dr. Josiah Rich, a professor of medicine at Brown University and co-director of the Center for Prisoner Health and Human Rights. "That's the prevailing practice," but, he says, it's one that should change.

Although involuntary opioid withdrawal isn't directly fatal for adult drug users, it can be "indirectly fatal," says Dr. Heidi Ginter, assistant chief medical officer for Community Substance Abuse Centers, a chain of treatment centers in New England. As inmates detox from methadone, their tolerance for opioids goes down while their cravings go up. That sets them up for an overdose after they're released, says Ginter. She says a third of her clients spent time behind bars before they sought treatment.

Burghardt knows how it feels. "You're dying for a fix," he says. Scheduling an appointment at a methadone clinic, however, takes days or even weeks. "So you end up relapsing and using again," he says. Burghardt says this cycle took the lives of three of his friends recently.

In fact, research shows incarcerated drug users are as many as eight times more likely to die immediately after release than at other times in their lives. And, patients who terminate methadone treatment are eight to nine times more likely to die immediately thereafter than those who don't.

Sometimes, Ginter says, clients end up behind bars while in her care. After undergoing prolonged and painful detox from methadone while incarcerated, she says, many choose heroin over treatment after they get out. "I'm basically having a conversation with somebody where they're opting for the lesser of two evils," she says. "That feels really hard."

Ginter's experience isn't unique. In one study, inmates who received methadone behind bars were eight times more likely to seek treatment and stay off drugs during the month following their release than those who received only counseling. In another study, drug users who were not incarcerated were also more likely to seek out methadone treatment when they knew they could continue it behind bars: an indication of how inevitable incarceration can feel for people addicted to illegal substances.

Still, corrections administrators say they prefer abstinence-based treatment programs. They worry that methadone, even when administered as a liquid, can be retained in inmates' mouths then sold and abused behind bars. Jails and prisons in New Hampshire already face smuggling of Suboxone, a variety of buprenorphine that is manufactured as a papery film, making it easy to conceal in books and mail.

There are practical concerns. Although methadone is inexpensive, facilities would either have to become licensed to administer it or transport patients to methadone clinics, as many do for pregnant women.

Ginter says for her, those reasons don't cut it. "This is a human rights issue," she says. "If somebody with diabetes eats a piece of cake at a birthday party, they don't get incarcerated. And their doctor doesn't say, 'Now I'm not going to prescribe your insulin because you ate a piece of cake.' "

Copyright 2016 New Hampshire Public Radio. To see more, visit New Hampshire Public Radio.
Categories: NPR Blogs

Peggy Girshman Gets The Last Word On Health Journalism

NPR Health Blog - Tue, 05/10/2016 - 1:07pm

Peggy Girshman diving in Hawaii in the summer of 2015.

Courtesy of Mitch Berger

Our friend and colleague Peggy Girshman, a longtime NPR editor and co-founder of Kaiser Health News, died in March. But her passion for health journalism survives her. She made sure of that.

Beyond the many journalists whose careers she launched and nurtured, Girshman wrote her own eulogy, complete with some hard-earned advice on matters of personal health and how to cover health and medicine.

NPR correspondent Rob Stein read it Saturday at a memorial service attended by more than 150 people, including a who's who of health and science journalists, at Brookside Gardens in Silver Spring, Md.

Before and after the speeches, there were cookies — lots of cookies — baked by fellow members of her Christmas cookie club.

Mitch Berger, Girshman's husband, gave us permission to publish her "auto-eulogy," as she called it, which has been edited lightly for clarity and length.

There's a common saying that, on their deathbed, no one says, "I wish I had spent more time at work." I'm an exception to that. A central tragedy in my life is that I couldn't work longer, if only to convince someone I was right about something.

I also wish I had divided my life to spend more time with my family, especially Beth, Helen, Irv, Natalie, Lianna and Annie, whom I order around and love like a niece. Well, maybe not much more time with my parents. And my friends, including the myriad of best friends, you all know who you are. And you've all been the best of friends to me, especially in the last few years.

Peggy Girshman, NPR Veteran And Journalism Pioneer, Dies At 61 March 15, 2016

OK, now that that's over with, I'm taking a few minutes when you have to listen to me. I'm only sorry I couldn't be there for your rapt attention and adherence to my advice. Here we go.

For folks with Stage 0 or less cancers, especially DCIS [ductal carcinoma in situ], or prostate, watch and wait. I understand. I was one of those people who say, "Get it out of me." Please resist that temptation.

At least half of these don't go on to become invasive cancers. Why should you do all kinds of bad things to your body unnecessarily? And, by the way, it costs waaaay too much.

If you are one of those people who can't resist the call of the surgeon, do not get a lumpectomy, aka "breast conserving" surgery. I can tell you that from personal and observational experience, it doesn't conserve the breast.

After the surgery, which often has to be done twice to get clean margins, there is the whole nightmare of radiation, which shrinks tissue and makes for painful inner scarring. Biggest mistake of my life was to do that. And there are a lot of mistakes to choose from.

If I only convince one of you to at least convince one other person, I've accomplished something. I know, I've done so much good work blah blah blah. But even one person not having surgery would be the crowning achievement of my life. I am not kidding.

Setting aside my own body (oh yeah, it really is set aside now), let's talk a little about evidence.

If you get nothing else from this memorial service, please think about evidence, truth as best it can be determined. Anecdotal evidence is only meaningful if it involves me, Peggy Girshman. Otherwise, trust the scientific method, where similar groups are compared and with large sample sizes, if possible. Especially when it comes to what you put in your body for medicinal reasons.

OK, I know there's a lot of eye-rolling out there right now. But why would you take anything that hasn't been proved to work? Belief is powerful. The placebo effect exists.

While we're at it, please stop with the lifestyle advice.

Don't knock people about what they're eating, how much or when. Yes, if you eat a lot of fresh fruits and vegetables and cut down on fat, you have lowered the chances you'll get cancer or heart disease.

But that is just one of so many factors, that to judge people about their quantity of fruits and vegetables is simply unfair.

Don't ask, if someone has lung cancer, if they smoked. Try really, really hard not to even think it in your head. It shows, believe me. It adds pain to an already painful, scary time.

Try to convince yourself that people get sick for so many reasons that we don't know about. One little mutation in one little cell.

Two people eating the same amount of sugar or carbs every day for years: One might develop diabetes and the other doesn't. Please don't examine what one person is eating to cast disapproval in your head while the other one gets a pass.

When 10 studies can't find any connection between X and Y, please believe it. Don't think about your friend or even yourself where it seemed to go the other way. Of course it sometimes goes the other way, but why would you want to live your life based on your friend, who is lovely but might have another claim next week.

Don't say, "I don't know how you can find anything in your office/house/car." In other words, wow, you're a slob. Yes, I'm messy, what do you care? Neat, vegetable-eating people are not morally superior to anyone else.

Be nice to people. Sounds really corny and pedestrian, but it's how I managed to succeed at work, no s***.

Always make sure there are cookies or something tasty to eat at any in-person meeting. As there should be, right now, in the back. You'll get to them very soon, I promise.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Does Putting On A Few Pounds Help You Cheat Death?

NPR Health Blog - Tue, 05/10/2016 - 11:39am

Calipers can give a more accurate measure of an individual's body fat, but for population-based studies, the BMI is the way to go.

Kris Hanke/Getty Images

A body mass index under 25 is deemed normal and healthy, and a higher BMI that's "overweight" or "obese" is not. But that might be changing, at least when it comes to risk of death.

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The body mass index, or BMI, associated with the lowest risk of death has increased since the 1970s, a study finds, from 23.7, in the "normal" weight category, to 27, which is deemed "overweight."

That means a person who is 5-foot-8 could weigh 180 pounds and be in that epidemiological sweet spot, according to the NIH's online BMI calculator. The results were published Tuesday in JAMA, the journal of the American Medical Association.

The researchers came to that conclusion by looking at data from three studies of people in Copenhagen, one from the 1970s, one from the 1990s and one from 2003-2013. More than 100,000 people were involved. Because Denmark has an excellent national health registry, they were able to pinpoint the cause of death for every single one of those people.

The risk of death for people who are obese, with a BMI of 30 or greater, also declined, to the point that it was on a par with some people of so-called "normal" weight.

So being fatter, at least a bit, may be healthier.

"I was surprised as a scientist to see how clear the result was," Borge Nordestgaard, a clinical professor and chief physician at Copenhagen University Hospital and senior author of the study, told Shots.

So he and his colleagues sliced and diced the data to see what could account for the shift. They looked at age, sex, smoking, cancer and heart disease. The most relevant was the decline in smoking since the 1970s. But when they looked at the mortality rates in nonsmokers who had never had cancer or heart disease, it also became associated with a higher BMI over time.

So what's going on?

"Now we get into the speculation part, right? I know you journalists always want that," Nordestgaard says. "One option certainly is over these three decades we have become much better at treating the cardiovascular risk factors that come with overweight and obesity."

That includes treating high cholesterol with statins; treating high blood pressure with diet, exercise and an array of medications; and making concerted efforts to help people to control blood sugar.

People in Denmark got heavier on average over the course of the study, as they have in the United States and most other countries. By 2013, 56 percent of the Danes had a BMI of 25 or higher. So you could think, OK, the new average is a heavier average.

Or you could wonder if being a bit heavier somehow helps confer health benefits that affect longevity.

Researchers have long known that people who are very thin tend to have a shorter life expectancy, often because they're dealing with cancer or other serious illnesses. The sweet spot on the BMI/longevity axis is typically somewhere near the middle. But there's not much data to back the notion that a bit more pudge is protective. "This is total speculation," Nordestgaard says.

The BMI has been vilified as a poor measure of an individual's health. Someone who is big, fit and well-muscled, like a pro football player, can peg an obese BMI. And all of the people in this study are white, so that's a limitation. But the BMI, which is a general measure of body fat, has proven useful for thinking about the health of large groups of people, as in this study.

Nordestgaard and his colleagues are going to dig into this more in an effort to figure out what's going on, but he cautions that these kinds of data dives can take many months.

But this does raise the prospect of whether it may soon be time to tweak the official definition of normal, healthy weight.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

GAO Audit: Feds Failed To Rein In Medicare Advantage Overbilling

NPR Health Blog - Mon, 05/09/2016 - 5:19pm

The Centers for Medicare and Medicaid Services has spent about $117 million on Medicare Advantage audits that have recouped just $14 million related to overcharging.

Jay Mallin/Bloomberg via Getty Images

Private Medicare Advantage plans treating the elderly have overbilled the government by billions of dollars, but rarely been forced to repay the money or face other consequences for their actions, according to a congressional audit released Monday.

In a sharply critical report, the Government Accountability Office called for "fundamental improvements" to curb overbilling by the health plans, which are paid more than $160 billion annually. The privately run health plans, an alternative to traditional fee-for-service Medicare, have proven popular with seniors and have enrolled more than 17 million people. The plans, which were the subject of a Center for Public Integrity investigation, also enjoy strong support in Congress.

GAO took aim at Medicare's primary tactic for recouping overcharges, a secretive, and lengthy, audit process called Risk Adjustment Data Validation, or RADV. Unlike many other anti-fraud programs, RADV has cost the government way more than it has returned to the treasury.

The GAO said that the Centers for Medicare and Medicare Services, an arm of the Department of Health and Human Services, has spent about $117 million on these audits, but so far has recouped just $14 million. CMS officials counter that the mere threat of RADV these audits has caused health plans to voluntarily return approximately $650 million in overpayments – and that upcoming audits will recover tens of millions more.

"As the MA (Medicare Advantage) program continues to grow, safeguarding the program from loss is critical," the GAO report said. The report did not name any of the health plans studied.

The GAO launched its audit in October 2014 in the wake of the Center for Public Integrity's "Medicare Advantage Money Grab" series. The articles documented nearly $70 billion in "improper" payments to health plans — mostly inflated fees from overstating patients' health risks — from 2008 through 2013 alone.

The Center's investigation traced the overpayments to abuse of a billing formula called a risk score, which pays higher rates for sicker patients and less for people in good health. Since 2004, however, the risk score formula has largely operated as an honor system, despite criticism that many health plans have overstated how sick some patients are to boost their revenues. That practice is known in medical circles as "upcoding."

In addition, CMS records released to the Center for Public Integrity through a court order in a Freedom of Information Act lawsuit show that overbilling has wasted tax dollars almost since risk scores were introduced in 2004. One confidential review of 2005 payments determined that nearly a third of patients enrolled in 22 health plans weren't as sick as was claimed. The audit projected overpayments of $4.2 billion as a result. Other CMS documents reveal that officials dubbed these health plans "high-flyers," but did little to reel them in, while RADV audits dragged on for years without reaching conclusions.

Medicare officials have quietly conducted these audits since 2008. But they have never imposed stiff financial penalties, even as evidence built up that billing errors were deeply rooted and wasting tax dollars at an alarming clip.

GAO in its report noted that CMS has failed to target health plans with "known improper payment risk," thus allowing the worst performers to escape the net. The GAO also criticized the agency for allowing audits and appeals to drag on for years. Some audits of 2007 payments to health plans are still under appeal, for instance.

In response to the GAO report, America's Health Insurance Plans, the industry's trade organization, said that an "unconfirmed diagnosis" in an audit doesn't necessarily mean that the person doesn't have the disease.

And in recent public comments, the trade group has criticized the RADV audit review process as not yet complete or "fully tested," to assure that it is "stable and reliable."

David Lipschuz, an attorney with the Center for Medicare Advocacy, said his group was "troubled" by the extent of the improper payments to Medicare Advantage plans and the government's "lack of progress on recouping and deterring such payments."

In an emailed statement, he added: "We hope that policymakers who protect MA (Medicare Advantage) profit at all costs, while at the same time often proposing to shift more costs on to the majority of beneficiaries in traditional Medicare, take heed of this GAO report and ensure that the recommendations are implemented."

GAO reviewers said that CMS is stepping up the RADV audits, but notes that much more needs to be done. GAO noted that officials expect the upcoming audits to recover $370 million, but that's just three percent of the total estimated annual overpayment.

CMS officials said they have begun auditing Medicare Advantage payments from 2011 and 2012 and have set a goal to have all Medicare Advantage contracts audited yearly.

"HHS is strongly committed to program integrity in the Medicare Advantage (MA) program and takes seriously our responsibility to protect taxpayer dollars by identifying and correcting improper payments," the agency said.

While federal auditors have struggled for years to root out these overcharges, at least a half-dozen whistleblowers have filed lawsuits accusing Medicare Advantage plans of ripping off the government.

In the most recent Medicare Advantage whistleblower case to surface, South Florida doctor Mario M. Baez alleges that insurance giant Humana Inc. knew of billing fraud at some South Florida clinics but did little to stop it. Baez argues that inflating risk scores not only wastes taxpayer dollars but also can harm patients. The suit, which was unsealed in late February, is pending. Humana has declined to comment on it.

This piece comes from the Center for Public Integrity, a nonpartisan, nonprofit investigative news organization. To follow CPI's investigations into Medicare and Medicare Advantage waste, fraud and abuse, go here. You can follow Fred Schulte on Twitter: @fredschulte.

Copyright 2016 The Center for Public Integrity. To see more, visit The Center for Public Integrity.
Categories: NPR Blogs

Top Medical Journals Give Women Researchers Short Shrift

NPR Health Blog - Mon, 05/09/2016 - 4:28pm
Top Medical Journals Give Women Researchers Short Shrift Listen· 4:28 4:28
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May 9, 20164:28 PM ET Heard on All Things Considered

From

Women only got top billing in 37 percent of medical studies published in leading journals over the past two decades.

Tom Werner/Getty Images

When you're settling in to watch a movie, and the music starts playing, it's hard to ignore the names that flash first in the opening credits: The Director. The Big Stars.

Name placement matters in academia, too. A recent study reveals there's a gender gap in who gets top billing on medical studies published in several of the most prestigious research journals.

Dr. Carolyn Lam, a cardiologist and faculty member of the Duke-NUS medical school in Singapore, says getting top billing isn't just about ego. The number of times you nab that "first author" spot on a research paper shapes how you're evaluated at work — everything from tenure possibilities to pay.

"This is our livelihood," Lam says. "It's important."

Traditionally, the last name in a series of authors on a science paper is also prestigious — it's reserved for the most established colleague. First and last in the series is best. That's why she was upset when she heard about the study in the British Medical Journal showing women are under-represented in that first position.

Giovanni Filardo and Briget da Graca, with Baylor Healthcare System in Dallas, took a close look at the names atop original research articles published in six of the world's leading medical journals over two decades.

While women were better represented as first authors in 2014 than 20 years earlier, their numbers have plateaued in recent years, the scientists found, and have declined in some journals.

Though women have been attending U.S. medical schools in roughly equal numbers as men since 2003, "substantial gender differences in rank and leadership remain in academic medicine," notes Dr. Kathryn M Rexrode, an associate professor of medicine at Harvard Medical, in an editorial accompanying the study.

And that may also be a problem for women's health, it turns out. In the same way that having more women as writers and directors in the movie business makes it more likely a film will have a female protagonist, research shows that studies of new drugs or therapies that have women as first authors are more likely to include a significant number of women as research subjects.

Dr. Deborah Diercks, who chairs the department of emergency medicine at UT Southwestern, says when she designs studies of why women are more likely to die from heart attacks, she approaches it differently than some male doctors do.

"I think a little bit more than some of my colleagues do about outside pressures," Diercks says. "Such as, the reasons women delay going to the hospital — is because they're a caretaker or because they have pressures to finish the wash or pick up the kids?"

She wonders if those pressures might also help explain why women less often get top billing on research papers. Another factor that might contribute, she says, is bias in the review process. The editors who make the decisions about who gets published are often men.

"I struggle with that a lot," Diercks says. "I do believe it's truly unconscious and unintentional but it amazes me that [that bias] is still there."

Gender bias, intentional or not, is something Carolyn Lam thinks about often.

Just one in five students in her medical school class in Singapore in the early 1990s were women. After graduation, Lam entered a male-dominated specialty — cardiology. Still, she doesn't fault the system entirely for the gender gap among first authors. In part, she blames herself.

For example, Lam was recently working with two male colleagues on a journal submission when they started talking about whose name should appear first. She stayed silent. And her name went second.

"I started examining myself a bit," Lam says. "Why didn't I ask to be first author?" She realized she should have advocated for herself.

"I think that sort of behavior is pervasive in many, many fields," she says.

So, last month, when Lam was finishing up another study she'd worked on with two different men and the question of authorship came up, she spoke out.

"My colleague — whom I totally respect — he wrote himself as first author, our senior colleague as last, and me as second," she says. "I was about to shoot off an email saying, 'OK, as long as our data get published.' "

But she caught herself and, instead, asked to be first author. Her colleague agreed.

This story is part of a NPR's reporting partnership with local member stations and Kaiser Health News.

Copyright 2016 KERA. To see more, visit KERA.
Categories: NPR Blogs

What Feds' Push To Share Health Data Means For Patients

NPR Health Blog - Mon, 05/09/2016 - 8:10am
Katie Edwards/Ikon Images/Getty Images

Two years ago, when the federal government first released data on how much Medicare paid physicians, the media coverage was widespread. Doctors who earned significant sums were dubbed "Medicare millionaires" and journalists highlighted unusual patterns in how some doctors bill for services.

When Medicare released its third round of data last Thursday, the coverage was practically nonexistent. In some ways, that's because data releases from the Centers for Medicare and Medicaid Services have become almost routine.

ProPublica has used CMS data to build our Treatment Tracker, another tool called Prescriber Checkup and a third called Dollars for Docs, among others.

On Monday and Tuesday, hundreds of people will gather in Washington, D.C., for Health Datapalooza, a conference devoted to the uses of health data. One of its main planners is Niall Brennan, chief data officer at CMS. (I am on the steering committee for the event.)

I spoke to Brennan last week about the agency's efforts to open up its data and what it means for the public. The interview has been edited for length.

CMS seems to have released a lot of data lately. Can you give us a rundown of what the agency has released?

One of the reasons for our success is that we actually started with relatively small and modest data releases — things like releasing data at the regional level on differences in Medicare spending among states and counties. And then we gradually built up to releasing more detailed information on discharges at hospitals; how physicians practice medicine in the Medicare program; how they prescribe drugs in the Medicare program; how they prescribe durable medical equipment such as wheelchairs. Most recently, we've released a lot of information on skilled nursing facilities and home health agencies, giving people a glimpse for the first time at the types of care that those providers provide.

The openness and transparency go significantly beyond this. We've released Sunshine Act Open Payments data, which is information on the payments that drug and device manufacturers make to physicians and hospitals. And we've also worked really hard on the [Affordable Care Act] marketplace and Medicare Advantage side of the house to give consumers information to choose their health care plan. Are my doctors in the plan I'm looking at? Are my drugs covered by the plan I'm looking at?

Tell me what's changed. Why are there now so many data releases?

I think a lot of the change, in addition to the administration's focus on open data, was the Affordable Care Act and the realization that data was moving from a byproduct of our claims payment operations to really a core function of the agency. It was not only essential for us, but for the general public, for patients, to have better data, better information to be able to navigate this move to value-driven care.

Do you think these data sets will be released each year?

I do. We're creating a good track record of consistency around releases. Unless something drastically changes in terms of agency priorities, I think people should expect to see these data releases on a regular basis for some time to come.

Why can't the data you're releasing be more current? We're only seeing 2014 data now.

"I don't think we can order or require transparency from private-sector companies but I do think that our efforts are having an impact," said Niall Brennan, chief data officer at CMS.

Courtesy of CMS

One of the reasons is that it takes quite a lot of internal CMS time and resources to crunch through the data and make it ready for publication. We have a responsibility when we release the open data to ensure the data is as accurate as possible and does not lead people to make wrong inferences or conclusions about any given provider. Another reason is the inherent time lag in the bills that providers submit to Medicare for adjudication and payment. It often, particularly for hospitals and facilities, can take six to nine months for the very final bills at the end of the tail to be adjudicated and finally settled.

How should people use these data?

We obviously hope that consumers will use the data to understand more about their doctors. We know based on frequent feedback that there are a lot of data innovators and data entrepreneurs and researchers and journalists using this data to understand more about the health care system, ask important questions about physician practice patterns.

Do these data sets fit together? Can they be set up to communicate with each other?

I think they can communicate with each other in a couple of different ways. The easiest example of this is at the individual physician level. Now at the individual physician level, you have a data set that shows the different procedures and doctor visits that they provide under Medicare. There's a second data set that provides information on the prescription drugs that they prescribe. And there's a third data set that lists the payments that they receive from drug and device manufacturers. You could potentially combine all three, or two of those three data sets and get enhanced insights into how physicians practice care. Others ways that I think they can be combined is at the local geographic, zip code or county level. You can start to use mapping software and the like to start grouping providers into geographic clusters and start to see if there are relationships between how hospitals provide care in a given area or skilled nursing facilities provide care in a given area.

What about data involving Medicare Advantage plans and state Medicaid program? Those haven't been released yet. Any sense of when they might?

I think generally with both programs, we have not necessarily had available data that is as mature and as high quality as we enjoy with the Medicare program. The good news is that for the past couple years, we have been collecting very detailed granular data from Medicare Advantage plans and we are analyzing that very heavily at the moment trying to get an overall gauge of the quality of the data and if it's suitable for public release. I would hope to have some positive news to report on Medicare Advantage data releases in the next 12 months or so.

Regarding Medicaid, for many years, we've been in a situation where I don't think anybody felt that the quality or the timeliness of the data we were getting from states was optimal. However we've invested resources in the last few years to revamping the data submissions process from state Medicaid agencies to CMS. That system went live a little earlier this year and there are several states submitting data into that system and we're not quite as far ahead as with Medicare Advantage data.

Is CMS putting pressure on the private sector to follow its lead and release more data?

Clearly we're leading by example. I don't think we can order or require transparency from private-sector companies but I do think that our efforts are having an impact. I think that providers in particular are more and more aware that this data has been made available. There are organizations like the Health Care Cost Institute, which is an organization to which many of the major health care insurers in the U.S. have contributed data, and they have also launched transparency tools. There's a tool called Guroo which allows people to look up the prevailing cost of procedures or interventions in their area. I think I see some positive developments in that regard.

Give us a clue of data sets you are going to release over the rest of the year.

In general, I hesitate to try and forecast too far in the future what we're going to release because our priorities are changing all the time and frankly we're releasing so much data now that the annual re-release cycle is consuming more and more of our time. I think what I'd say is that our Medicare provider releases now cover more than 85 percent of Medicare fee-for-service spending. I would certainly hope to continue to make inroads into that number and push it even higher over the rest of 2016.

ProPublica is a nonprofit newsroom based in New York. You can follow Charles Ornstein on Twitter: @charlesornstein.

Copyright 2016 ProPublica. To see more, visit ProPublica.
Categories: NPR Blogs

Notorious FDA? Feds Turn To Hip-Hop To Tamp Down Teen Smoking

NPR Health Blog - Mon, 05/09/2016 - 4:26am
Notorious FDA? Feds Turn To Hip-Hop To Tamp Down Teen Smoking Listen· 3:59 3:59
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May 9, 20164:26 AM ET Heard on Morning Edition

An ad from the Food and Drug Administration's Fresh Empire campaign.

FDA

The federal government is getting into hip-hop — well, sort of.

For its latest anti-tobacco campaign, the Food and Drug Administration is trying to harness hip-hop sounds, style and swagger to reach black, Hispanic and other minority teens — who disproportionately suffer the consequences of smoking.

The campaign — called Fresh Empire — features videos with dancers, DJs, beat-boxers and rappers.

In one of the ads, California-based artist Jessica Williams, whose stage name is Jayy Starr, does a spoken-word piece about her grandfather's battle with lung cancer.

YouTube

Williams and all the other hip-hop stars featured in the public health campaign are spreading a simple message, says the FDA's Kathy Crosby, who worked on the campaign.

"They're helping us seed the notion that you can be hip-hop and tobacco-free," she says. "We went into different communities and found these up-and-coming dancers, up-and-coming rappers, up-and-coming DJs that are really role models within their community."

The ads first aired nationally in conjunction with the BET Hip-Hop Awards last fall. The campaign has also targeted hip-hop fans at concerts and other events, like the Hot 107.9 Birthday Bash in Atlanta and SneakerCon in the San Francisco Bay Area.

But can the federal government really pull off hip-hop?

"My own impression was that it was corny and forced — and trying too hard to appeal to urban youth," says Brian Mooney, a teacher at High Tech High School in North Bergen, N.J., who often incorporates hip-hop into lesson plans.

So the response from students in his sophomore English class came as a surprise.

Sophomore Olivia Ruiz's reaction, after watching the videos: "They're cool. I mean, they got swag."

Wait, really?

"Especially the music in the background and the fashion and everything," says Amirah Johnson, another student. "It's like we're seeing ourselves on TV."

Another teen in the class, Ana Guzman, says it's nice to see people who look, walk and talk like herself and her friends.

"It's more of the things that we do, more of the things that we listen to, more of the things that we daily live by," Guzman says. She and her friends like to fool around and freestyle rap after school, just like the teens in the Fresh Empire videos.

YouTube

Could it be? Has the FDA somehow transformed into The Notorious FDA?

All told, the campaign will cost $128 million, paid for by tobacco industry fees. The FDA is betting that investment will pay off, partly because the approach is based on a growing body of research showing that teens — more so than any other age group — care deeply about their social group. And to really get to teens you first have to understand how they see themselves. Are they hip-hop? Goth? Preppy? Or, maybe, something else entirely.

Meghan Moran, an assistant professor who specializes in health communication at Johns Hopkins School of Public Health, led a recent study looking at health campaigns that tap into teen culture.

She recruited 250 teens, ages 13 to 15, and asked them to describe the subculture or group that fit them best. Then she had everyone look at ads that either targeted their crowd or a different group.

"We found that when youth were exposed to messages that targeted their particular subculture or crowd, they were much more likely to respond favorably to that message," Moran says.

That outcome may strike some as obvious, she says, but until recently, public health campaigns have taken a more generalized, one-size-fits-all approach.

"And now we know," she says, "that's not necessarily the most effective way to go about things."

Moran wasn't involved in the development of the FDA's campaign, but thinks it could lend much needed help in driving down rates of smoking among minority youth. Tobacco-related illnesses are the No. 1 cause of death among African-Americans — though a slightly higher percentage of white Americans smoke.

Plus, cigarette companies spend millions marketing to hip-hop fans — sponsoring concerts and buying up product placement spots in music videos, notes Dr. Pam Ling, an internist and professor at the University of California, San Francisco. Ling didn't work on the FDA's campaign, but has studied and designed other anti-tobacco campaigns aimed at young people.

"The campaign does a good job of competing with a lot of the commercial marketing we see that targets young people of color," she says.

Not all the FDA ads hit the mark. Most of Brian Mooney's New Jersey sophomores were skeptical of one that starts with a guy picking up his girlfriend in his car.

"He didn't even say 'hello' when she walked into the car," Melina Soriano points out. "He needs to say 'hello!' "

But everyone loved the spoken-word piece.

Fifteen-year-old Jahvel Pierce remembers first seeing it on the music channel MTV, during a commercial break.

"It really drew me in," he says.

The piece does go deeper than most commercials, or even PSAs, adds his classmate Ana Guzman. She had an uncle who died of lung cancer and says the campaign especially resonates with her.

"When he passed away I made a promise," she says. "I made a promise to myself and to him, not to smoke, because I don't want to give more to a company that just killed my uncle. So, that video, basically, was describing my life."

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

On Mother's Day, Mourning The Mom My Baby Will Never Know

NPR Health Blog - Sun, 05/08/2016 - 5:00am

The author at age 3 with her mother Brenda, in 1986.

Courtesy of Kendra Snyder

I keep the plastic stick hidden in a round basket on top of our bathroom sink, safely nestled between our hairbrushes. It's been months since it first displayed that fat blue plus sign, a shock after nearly a year of only seeing minuses. I tell myself and my husband that it would just feel weird to throw it out. But at 31 weeks pregnant, I've figured out that there's more to why I can't seem to let it go.

This Sunday will be my first Mother's Day (if you count mothers of fetuses, which I certainly do). It will also be my first Mother's Day without my mom.

I told her our news when I was just six weeks along, days before my first doctor's appointment would show me and my husband the blinking heartbeat coming from that tiny little bean of a thing. Insecurities flooded my head: Maybe the test was a fluke. Should I take another one to be sure? What if I've lost the baby already? I'd had some spotting — wasn't that a bad sign? It all felt so fragile, so fleeting.

I waited until my dad stepped out of the room in search of a nurse, and then I grabbed her hand.

"Mom, I'm pregnant."

She continued to look straight at me, as she'd been doing for the last few minutes, and let out a sigh.

"Mom, did you hear what I said? I'm pregnant."

Silence.

I'd been making trips down to Florida from New York every month or so since she had been diagnosed. Each trip illuminated a new horror of her brain cancer's progression.

We joked about some of the earlier symptoms together, like how her mind seemed to split into two halves, making her hands obsessively wipe up crumbs on a tablecloth or pick at a piece of fabric as she tried her hardest, without success, to stop. She was always quick to laugh, and so making light of these sudden and strange tics felt natural. It gave us a way to temporarily escape the blanket of fear that darkened the house.

But other symptoms were deeply upsetting, for her and for my family, like when she would temporarily forget who my dad was and why he was there. "This man won't stop bothering me," she'd say quietly and covertly on the phone to me. "I think I need to go home now."

Or when, on a trip to Italy — a place she'd always wanted to visit — she woke up in the middle of the night, walked out of the hotel in search of a bathroom while everyone was sleeping, and stripped off her urine-soaked clothes in the empty streets of Venice.

Kendra and her mother Brenda traveling in Italy.

Courtesy of Kendra Snyder

Day by day, little by little, we lost her. My daily phone calls with her went from hour-long gab sessions to short check-ins to single-word responses via my dad's cell phone after she forgot how to use her own.

For a while it was like her brain was running on preprogrammed prompts. "Hi, Mom," I'd say, to which I'd get a warm "Hi, honey" in return. But all familiarity would melt away as soon as I'd ask her another question, giving way to nothing but the occasional syllable as she struggled to find her words.

Soon, even her automated responses faded away.

Her nursing home reminded me of the one I volunteered at in high school to sing Christmas carols or play board games. Frosty air pumped out of the vents and mixed with the smell of disinfectant and stale urine. Grey-haired men and women in wheelchairs lined the hall surrounding the nurses' station, all eerily quiet except for the occasional snore or shout. A short middle-aged resident with purple hair in elaborate braids walked back and forth yelling at the staff about the poor lunch choices.

My mom never left her room. Talking, walking — those abilities disappeared quickly. As did her recognition of me.

I was prepared for that, but I still hoped that my news would incite something within her. Or that at least I'd get a sign — a smile, a nod — that on some level, she understood that she was going to be a grandma. Maybe that's what her heavy sigh was, but it sounded pained, not pleased. I questioned whether I should have said anything in the first place.

I had become convinced the woman I knew as my mom was no longer in the shell that occupied that nursing home room. Her blue eyes were large and protruding, hardly blinking. Her mouth mostly gaped open. Her limbs curled tightly at awkward angles. Beyond the physical changes, she was missing what I can only describe as her internal spark — that light in her eyes that always popped out at some point during my visits with her, no matter how bad of a time her brain was giving her that day. But what if I was wrong? What if that sigh meant that at least part of her was there, realizing that she wouldn't be around for the next chapter in my life?

That was my last visit with her. She died three weeks later at age 62, almost exactly a year after she was diagnosed with glioblastoma multiforme.

My mom, Brenda, lost her own mother, Jean, when she was just 24 — six years before I was born. My mom and her four siblings idolized her, so to my younger brother and me, Grandma Jean became a kind of saint: A jolly and supremely kind Italian woman with a huge smile and open arms who would have doted on us nonstop, had we ever met her.

I've come to realize that this is how my baby might think about my mom, too. Because while she wasn't perfect, she was pretty darn close to it as far as parents go. My brother and I adored her. She was our healer, our confidante, our comic relief and our number-one fan. We always felt the love she had for us, no matter what. I still feel it now.

And so I've held on to that stick because I've learned in the last year how unfair life can be. I also hold onto it because I've learned how incredible it is that our baby, who started as a dividing clump of cells, now turns and kicks inside of me. The stick reminds me that there are no guarantees — that I might have 50 years to spend with this baby, or maybe far less — and that I should be grateful for every one of those moments.

Kendra Snyder is a writer based in New York City. You can find her on Twitter @KendraSnyder.

Copyright 2016 NPR. To see more, visit NPR.
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Professional 'Guinea Pigs' Can Make A Living Testing Drugs

NPR Health Blog - Sun, 05/08/2016 - 4:46am
Professional 'Guinea Pigs' Can Make A Living Testing Drugs Listen· 3:53 3:53
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May 8, 20164:46 AM ET Heard on Weekend Edition Sunday

Putting experimental drugs to the test can be a way of life.

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There are lots of ways to make a buck, but becoming a human guinea pig for drug research has to be one of the oddest.

"We are selling our bodies, most definitely," says Paul Clough, who has taken part in more than 80 drug tests in the past 11 years. "Well, renting," might be more accurate, he concedes. Clough, who's 37, also runs a website that helps people find trials to sign up for.

Some are like the one he's doing right now, which stretches over three months and involves multiple stints living in a clinic with other volunteers, eating cafeteria food and showing up on time to get his vitals checked or to pop another pill.

"It's like summer camp," he says, then reconsiders, since in this trial he can't leave. "It's kind of like being in jail, except you don't get shanked in the shower."

Clough first heard about this line of work from a homeless man in Kansas City. Since then, he moved to Austin, Texas, to be closer to some of the big clinics that pay well. He says he can make thousands of dollars in just a few weeks. "Generally, the more procedures, the more perceived risk in a study, the more it's going to pay," he says.

The early tests, though usually safe, can carry unexpected hazards. In January, the test of an experimental pain drug in France was halted after several participants developed serious neurological problems. One man died.

"Every time you see a TV commercial for a drug and they rattle off all the reasons why you shouldn't take the drug — that's all information that they got from people like me," says Clough.

He may be overstating the case a bit. Larger trials of the potential new medicines in people with illnesses the drugs aim to treat are more likely to uncover a wide range of side effects, but there's no question that these early tests in humans help reveal the potential hazards of experimental medicines.

Those so-called phase 1 studies involve a small group of healthy people to determine the right dosage and to get a first look at what the side effects in humans might be. A drug that passes the first test will then move on to larger human studies where it is typically compared with a placebo or other treatment in patients suffering from the condition it's meant to help.

Clough says he'll do about eight or nine trials a year. It's enough to fund day-to-day life, plus travel. He's planning a trip to Alaska to photograph bears.

Like other serial participants in clinical trials, Clough knows that what he's doing could potentially help others down the line. But that's not the main drive for volunteers. "We need money," says Clough.

And for some people, especially those with a history of incarceration, clinical trials are a rare opportunity. "I can't get a regular job because I have a couple of legal problems in my background," he says. But when he signs up for a clinical trial, he says, "They're only looking at what your body does, not what you did."

Sociologist Jill Fisher, at the Center for Bioethics at University of North Carolina in Chapel Hill, says that's a perspective she's come across frequently in her research. She studies people who participate repeatedly in phase 1 clinical trials, including self-proclaimed professionals like Clough. "I think that says a lot about our system overall and what kind of opportunities we have for people in a period of post-incarceration," she says.

Until the 1970s, experimental medications were often tested in prisoners. Now, clinics rely on healthy volunteers, who get paid for taking the risk, typically around $200 a night spent in a facility.

For a lot of people, it's good money. But Fisher says there are a few things about phase 1 clinical research that are concerning.

For one, medical research trials in the later stages of drug development — usually involving patients who could gain something more than money from taking the experimental medication — tend not to involve enough minority participants. By contrast, in phase 1 research, she says, "The vast majority of participants are under-represented minorities." In the Northeast they're typically black men, and in the Southwest they're typically Hispanic men.

The drugs they're testing may go on to make billions of dollars for pharmaceutical companies, though the vast majority that manage pass phase 1 never make it to market.

"I am very concerned about the fact that we're using a segment of our population who might not ever be able to afford the drugs that they're part of testing, and not compensating them perhaps to the degree that we really should," she says.

Robert Biafore doesn't see it that way. He's a former car salesman who lost his job when the economy went sour in 2008. Biafore says he's participated in at least 50 trials in the last six years.

"My time will come to an end ... and I will go back to selling cars. But in the meantime, this is easy. And I'm getting full medical checks," says Biafore, who's uninsured. "Where else am I going to go and get labs done, physicals done, ECGs done, MRIs looked at and people are going to look at my body and tell me what is wrong with me before something's even wrong?"

He acknowledges that his line of work has risks. But Biafore says the worst that's happened to him was that he got a rash and vomited.

"It's all part of the game," he says. "You're letting scientists use your body to get data for clinical results, so they can get it approved by the [Food and Drug Administration]. It is what it is. You can't be afraid of it."

Every time someone picks up medicine from a pharmacy, or gets a prescription, they owe a debt to the human guinea pigs. "If it wasn't for people like us you wouldn't get that medication," Biafore says.

Copyright 2016 NPR. To see more, visit NPR.
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When Pregnant Women Get Flu Shots, Babies Are Healthier

NPR Health Blog - Sat, 05/07/2016 - 5:00am

Doctors don't always suggest that pregnant women get flu shots, which may account for the relatively low vaccination rates.

Jamie Grill/Tetra images RF/Getty Images

Kimberly Richardson has never gotten a flu shot. Since she's healthy and considers the seasonal vaccines a "best-guess concoction" of the viruses expected to dominate, the northern California gym teacher and mother of two says she didn't want an "injection of something that may or may not keep me healthy in the long run."

She's not alone. In an analysis of 245,386 women who delivered babies at Utah and Idaho hospitals over nine flu seasons, 90 percent said they didn't get vaccinated for influenza while pregnant. Those who did reaped benefits — their babies were healthier. As a group, infants whose moms reported getting a flu shot during pregnancy had about one-third the risk of flulike illness during their first six months of life, compared to babies of unimmunized mothers.

Disease-fighting flu antibodies are a "gift the mom gives her baby across the placenta," says Julie Shakib, a pediatrician at the University of Utah School of Medicine who led the study, published this week in the journal Pediatrics.

In 2006, researchers at Kaiser Permanente published a similar analysis of 41,129 babies born between 1995 and 2001. But that study found no correlation between rates of infant illness and flu vaccination in expectant mothers.

This new analysis included six times as many babies and eight times as many vaccinated moms, notes Eric France, a pediatrician and preventive medicine physician with Kaiser Permanente Colorado and leader of the 2006 study. "This is the paper I wanted to write 10 years ago," he says. Larger studies tend to be more reliable because they're more statistically accurate.

Other prior studies have shown that babies do benefit from maternal immunization — including a 2008 trial in Bangladesh that randomized 340 pregnant women to receive a flu shot or a control vaccine. Randomized trials are considered the gold standard for clinical research. However, a study that assigns some participants a placebo flu vaccination would be considered unethical in the United States given the country's standard of care. Instead, most U.S. studies observe a particular group over time or survey a group retrospectively, as in the current study.

These analyses are challenging. First, it's hard to agree on what constitutes "flu." Do you count all babies that show up at the doctor's office with fever and cold symptoms? Do you restrict analysis to cases that were confirmed by lab testing or focus only on confirmed flu that required hospitalization? The new analysis looked at all three categories.

It also takes a long time to get enough cases for statistically sound results. In the new study, which tracked 249,387 babies under six months old who were born between December 2005 and March 2014, only 0.35 percent (866 babies) met criteria for the broadest classification—a diagnosis of "flu-like illness." A mere 0.26 percent (658 babies) had lab-confirmed flu, and among those cases less than a quarter (151 babies) were hospitalized because of their illness.

Furthermore, only 10 percent of expecting moms said they'd gotten a flu vaccine. Immunization rates were actually much lower during the first four years of the study—around 2 percent—but jumped to 21 percent over the five flu seasons after the 2009-2010 H1N1 pandemic. When H1N1 struck again in 2013-2014, about half of the pregnant women in the study reported getting vaccinated for flu.

"Over time we're actually encouraged by the improvement in providers' ability to deliver the flu vaccine and strongly recommend it," says Shakib. "There's been a culture shift." A recent study of postpartum women found that expecting moms were far more likely to get a flu shot if their prenatal care providers recommended it.

Still, given the low overall immunization rate across the current study, the researchers collected data more than eight years to get 866 babies with at least one flu-like illness. Among those, 96 percent (834 babies) were born to moms who didn't get a flu shot—which means 4 percent (32 babies) developed the flu despite their moms getting immunized while pregnant.

Now let's figure out how this translates to flu protection for babies.

If the flu vaccine had no impact on infant illness rates, you'd expect the percentage of flu-afflicted babies to equal the percentage of unimmunized moms. Under this assumption 10 percent (87 babies) should have been born to vaccinated mothers, since we know that 10 percent of mothers reported getting a flu shot. However, in reality there were only 32 infant flu cases among vaccinated mothers, which suggests that 55 babies—or 63 percent—were protected. Applying a similar analysis to lab-confirmed flu, the study found that maternal vaccinations led to a 70 percent reduction in infant illness.

So how does mom's flu shot protect her baby? After getting vaccinated, a pregnant woman makes specialized proteins called antibodies, which recognize flu viruses and boost the body's defenses against these pathogens. "Those antibodies can cross the placenta and go into the fetal circulation," says Mitch Kronenberg of the La Jolla Institute for Allergy and Immunology.

The protection babies receive is known as passive immunity. Unlike mom's defenses, which were "educated" to recognize viral proteins in the vaccine, the baby's immune system "didn't get trained but took something from the mother and used it," Kronenberg says.

Placental antibodies stick around in the baby for up to six months. They're thought to be different from the protective antibodies found in breast milk, which may help shape the immune system's relationship with gut-dwelling bacteria, according to a mouse study published Thursday by UC Berkeley researchers.

Shakib and coworkers have an ongoing study to determine if the immune protection a baby gets from maternal flu antibodies is stronger if mom breastfeeds. The researchers are analyzing blood and breast milk samples from 40 mother-infant pairs at the University of Utah Hospital. They expect to publish the results within a year, Shakib told NPR.

Esther Landhuis is a freelance science journalist in the San Francisco Bay Area. Follow her at @elandhuis.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

How To Teach Children That Failure Is The Secret To Success

NPR Health Blog - Fri, 05/06/2016 - 1:45pm

Saying "That's OK, you're still good at writing" may not be the best strategy, researchers say.

CAP/Getty Images

Is failure a positive opportunity to learn and grow, or is it a negative experience that hinders success? How parents answer that question has a big influence on how much children think they can improve their intelligence through hard work, a study says.

"Parents are a really critical force in child development when you think about how motivation and mindsets develop," says Kyla Haimovitz, a professor of psychology at Stanford University. She coauthored the study, published in Psychological Science with colleague Carol Dweck, who pioneered research on mindsets. "Parents have this powerful effect really early on and throughout childhood to send messages about what is failure, how to respond to it."

Although there's been a lot of research on how these forces play out, relatively little looks at what parents can do to motivate their kids in school, Haimovitz says. This study begins filling that gap.

"There is a fair amount of evidence showing that when children view their abilities as more malleable and something they can change over time, then they deal with obstacles in a more constructive way," says Gail Heyman, a professor of psychology at the University of California at San Diego who was not involved in this study.

But communicating that message to children is not simple.

"Parents need to represent this to their kids in the ways they react about their kids' failures and setbacks," Haimovitz says. "We need to really think about what's visible to the other person, what message I'm sending in terms of my words and my deeds."

In other words, if a child comes home with a D on a math test, how a parent responds will influence how the child perceives their own ability to learn math. Even a well-intentioned, comforting response of "It's OK, you're still a great writer" may send the message that it's time to give up on math rather than learn from the problems they got wrong, Haimovitz explains.

She and Dweck conducted a series of smaller studies to explore how the interactions between parents' failure and intelligence mindsets affected their children's beliefs about intelligence.

First they interviewed 73 parents and their fourth- and fifth-grade children about their beliefs on failure and intelligence. The parents were mostly mothers with at least a college degree; they lived in the San Francisco Bay Area. The questions focused on whether they viewed intelligence as something that could change and whether they saw failure as positive, facilitating growth and enhancing productivity or as negative, debilitating and inhibiting learning.

The way children perceived "being smart" was not related to how their parents perceived intelligence, but it was related to how their parents reacted toward failure.

"Parents who had more of a failure-is-debilitating mindset had children who were significantly more likely to believe that intelligence is fixed," they found, even after accounting for how parents perceived their children's academic success.

"The more parents believed that failure is debilitating, the more likely their children were to see them as concerned with their performance outcomes and grades rather than their learning and improvement," the study found.

Then the researchers surveyed 160 different parents online to find out how they would respond to their child coming home with a failing quiz grade. Those who saw failure as negative were more likely to worry about their child's abilities in that subject or to comfort their child about not being talented in all subjects. But parents who saw failure as an opportunity were more likely to ask their child what they learned from the quiz, what they still can learn and whether asking the teacher for help would be useful.

Through two more surveys of 102 Bay Area parents and their children and 100 fourth- and fifth-grade students, the researchers found that children could correctly identify their parents' beliefs about failure but not necessarily about intelligence — and it was the former that matched up with the children's own beliefs about intelligence. Finally, the researchers conducted a randomized experiment with 132 parents to discover whether parents' failure beliefs directly cause their children's beliefs through parents' reactions to failure: they did.

"The takeaway is that when your child is struggling on something or has setbacks, don't focus on their abilities, focus on what they can learn from it," Haimovitz says. One way, she says, is to ask a child: "How can you use this as a jumping-off point?"

But it's unclear how much the study's findings relate to children of various ethnic, racial and socioeconomic backgrounds. Related research Heyman has done in China revealed a mixed bag in terms of results.

"Cultures have very different beliefs about effort and ability, and asking subtly different questions you can get different answers," Heyman says.

Whereas academic success often correlates with athletic or social success among white students, the same is not necessarily true among black or Latino students, according to Cleopatra Abdou, an assistant professor of psychology at the University of Southern California. What is consistent across cultures, however, is the powerful influence that beliefs people internalize as children follow them through life.

"The messages we get from our parents, whether explicitly or symbolically or subconsciously, stay with us and are very hard to unlearn and to overcome" if they're not helpful, she says. "Sometimes we have internalized faulty beliefs or beliefs that don't serve us."

Further, taking the learn-from-failure message too far might backfire eventually. "If you're being told this message you can learn anything and you've done everything you can and you're not getting anywhere, then maybe at a certain point you say you're going to say I just don't believe this," she adds.

Further, children's mindsets can also be influenced by their temperament, such as their tolerance for frustration, Heyman says.

"One thing we do know in recent years, there's too much blaming of parents," Heyman says. "Temperament is extremely important and it's biologically based, and to deny that causes all kinds of problems."

The challenge for parents is to support children without setting them up for failure.

"There's this very difficult fine line between parents and teachers helping children enough so that they can do things on their own that they couldn't do otherwise but not to help them so much that they expect other people to do it for them and don't get pulled up to a higher level," Heyman says. "You slowly pull back as the kids get better on their own, but not let them flail around so much that they get frustrated and give up."

Tara Haelle is the co-author of The Informed Parent: A Science-Based Resource for Your Child's First Four Years. She's on Twitter: @tarahaelle

Copyright 2016 NPR. To see more, visit NPR.
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How A Cancer Drug Has Saved People From Going Blind

NPR Health Blog - Fri, 05/06/2016 - 10:30am

Treatment for age-related macular degeneration requires injections in the eyeball.

Peter Cade/Getty Images

Ten years may not seem like a long time, but in my field, ophthalmology, it has made the difference between going blind and still being able to drive.

Ten years ago, if you developed wet age-related macular degeneration, a disease that wreaks havoc on central vision and limits the ability to read, recognize faces and generally see up close, there wasn't much we could do. If you were lucky and had a specific form of the disease, the best we had to offer was a laser treatment called photodynamic therapy, or PDT. Sadly, it didn't really do enough to help save vision; most people's sight still worsened.

Then some brilliant minds applied principles of cancer therapy to come up with a treatment that could actually improve vision in people with wet AMD. They realized that the two diseases had an important trait in common — they both involved the growth of new blood vessels, whether in tumor cells or in the retina. They used a colon cancer drug that attacks these new blood vessels in tumors to target the similar vessels in wet AMD. I feel lucky to be practicing today and to be able to offer my patients such a game-changing treatment.

Still, it's not without difficulty. The treatment involves injections of medicine into the eye, sometimes on a monthly basis. Lest you run screaming from your computer or smartphone at the mention of eye injections, it sounds quite a bit scarier than it actually is. Of course that's easy for me to say, but when the alternative is going blind, it changes your perspective.

Nonetheless, these injections are a huge burden on patients and their families. Family members often have to take time off work to drive their loved ones to their frequent appointments, or patients may still be working themselves and have to leave work.

Then there's the cost issue. Avastin, the colon cancer drug, costs about $50 per dose when used "off label" in the eye. The other two medications, Lucentis and Eylea, which were developed specifically for use in the eye, cost around $2,000 and $1,800, per dose, respectively.

Most ophthalmologists start with Avastin. If they need to switch medications, even if patients have Medicare there can be significant costs to the patients themselves. I have had patients who couldn't afford the switch when they needed it. Even the lower-cost Avastin adds up, especially for those on a fixed retirement income. And some patients can't even afford the less expensive medication when it needs to be repeated every month.

Then there is the public health cost. Since 11 million people have AMD and many could benefit from treatment, it's an issue not just for patients but for taxpayers and the health care system.

But back to the good news. This week, a large study of Avastin and Lucentis, the Comparison of AMD Treatment Trials, came out with data that looked at how people did after five years of treatment.

The researchers first compared the two treatments and found them to be similar. They then followed 647 of the original 1,185 patients in the study after the trial ended. The patients were still receiving treatments and being followed by their ophthalmologists, but were not necessarily on the same medication or treatment plan as they were while in the study. The results were published Monday in the journal Ophthalmology.

At five years, about half of patients still had vision good enough to meet most states' driving requirements, 20/40 or better, and 10 percent had what we consider normal: 20/20 vision. This would have been unheard of in the days before these injections. The PDT laser didn't come remotely close to helping that many people.

Of course, that means that about half of the patients aren't able to drive and do not have such excellent vision. Twenty percent of those people have 20/200 vision or worse, which qualifies as legally blind in the U.S. And while the new data are hopeful, as a doctor who sees these legally blind patients as well as those who do so well, it's hard not to get stuck on those 20 percent, those that are left behind.

We haven't yet figured out how to get at all the different aspects of AMD, including the "dry" form, for which there is no treatment. These patients are still suffering. Certainly we are trying to find answers, and studies are being launched to look at those who are still losing vision. I can only hope that 10 years from now, we'll have an answer to that, too.

Julie Rosenthal is an ophthalmologist at the University of Michigan Kellogg Eye Center who specializes in diseases of the retina and vitreous.

Copyright 2016 NPR. To see more, visit NPR.
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In Prince's Age Group, Risk Of Opioid Overdose Climbs

NPR Health Blog - Thu, 05/05/2016 - 3:51pm
In Prince's Age Group, Risk Of Opioid Overdose Climbs Listen· 4:21 4:21
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May 5, 20163:51 PM ET Heard on All Things Considered

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People in their mid-40s to mid-60s are more likely than any other group to be prescribed opioids with benzodiazepines. Both kinds of drugs can hamper breathing and mixing them is especially risky.

Erwin Wodicka/iStock

Evidence is mounting that Prince may have died of a drug overdose. While the medical examiner hasn't yet released the results of the autopsy and toxicology scans in this case, opioid overdose in middle age is all too common.

In 2013 and 2014, according to the The Centers for Disease Control and Prevention, people ages 45 to 64 accounted for about half of all deaths from drug overdose. Prince died on April 21 at his home and music studio, Paisley Park, in Minneapolis. He was 57.

Experts say there are a number of scenarios that increase risk of overdose, which is often accidental, for people over 55. Imagine you're in your 50s. You injured your shoulder a while back and it just hasn't gotten better. You take prescription painkillers — an opioid like OxyContin — to help with the pain. Let's say you've been taking it for a couple of years. Your body has built up a tolerance to the drug, and now, you need to change it up to get the same amount of relief. When it comes to the potential for overdose, says Boston Medical Center epidemiologist Traci Green, this is one of the most dangerous crossroads.

"We oftentimes see that the dose will increase with an individual over time or they might rotate or switch to another medication to experience pain relief. And so, at each rotation or change, there's a risk [of accidental overdose] because you're moving from one drug to another," she says.

Your body might not be used to that high dose, she says, or that different medication. She continues: Let's say you also suffer from anxiety. Benzodiazepines can help with that. But taking opioids and benzodiazepines, or "benzos," together is a dangerous combination.

"There are wonderful medications used for treating anxiety. However, in the presence of an opioid, they can potentiate the other," she says.

"One opioid plus one benzo doesn't equal the effect of two in the individual," Green says. "It's like one plus one equals four, or six."

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Opioids can depress the body's drive to breathe and so can benzodiazepines. Combine them and that effect mounts. You could stop breathing, and never wake up. And lots of people are taking these drugs in combination. In fact, people in their mid-40s to mid-60s are more likely than any other group to be prescribed opioids with benzodiazepines, according to the National Center for Health Statistics.

It's taking a toll. And there's been a particular increase for people over 55, Green says.

"It is indeed a demographic to keep an eye on," she says, partly because of another risk factor. People in this older age range may be more likely to live alone or be otherwise isolated — maybe from divorce or because their kids have moved out.

So, Green says, "If something happens, if no one's there to revive you, then you're more likely to die of that experience."

University of Rhode Island Pharmacy professor Jeffrey Bratberg says the way people in this age group tend to take drugs is also putting them at higher risk.

"They're taking longer-acting opioids," he says. "They're taking doses that, at certain thresholds, are associated with increased overdose death."

Also, Bratberg says, they're more likely to have chronic health conditions that put them at higher risk of respiratory depression.

Medical conditions like chronic obstructive pulmonary disease or even the flu can amplify opioids' ability to depress breathing. And some percentage of these drug users, he says, will develop a substance use disorder.

So why are doctors prescribing so much, in such combinations? Bratberg says it's how the physicians were trained.

"If you're a primary care prescriber and your patients are doing OK, maybe you're just not thinking about that," he says. "Plus there's difficulty in telling the person whose pain may be controlled by opioids, and their anxiety may be controlled by benzodiazepines, to say, 'Now we're going to taper you off because this is harmful.' "

So millions of people are on opioids — most of them over 45 — and that means some are at risk of overdose. Bratberg says we should be educating patients and doctors.

"We're really making a push nationally and regionally to educate prescribers about those risks, and to use tools available to warn folks about that."

Tools that that help lower the risk include naloxone, the overdose rescue drug. There's also medication, such as buprenorphine or methadone, to assist people who have become addicted to painkillers safely stop their use. In essence, those drugs keep a low level of opioids in the system to keep someone from going into withdrawal without getting them high.

This story is part of NPR's reporting partnership with local member stations and Kaiser Health News.

Copyright 2016 Rhode Island Public Radio. To see more, visit Rhode Island Public Radio.
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We Found Joy: An Addict Struggles To Get Treatment

NPR Health Blog - Thu, 05/05/2016 - 2:47pm
We Found Joy: An Addict Struggles To Get Treatment Listen
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May 5, 20162:47 PM ET Heard on All Things Considered Lorenzo Gritti for NPR

This story is part of NPR's podcast Embedded, which digs deep into the stories behind the news.

Sitting on a dresser in the back bedroom of a house in Austin, Ind., is the bottom of a soda can. A woman places a sliver of a pill, a powerful prescription opioid called Opana, on the jagged half-can. She begins to heat the pill with a cigarette lighter, melting its hard white coating and turning it the color of whiskey.

Her name is Joy.

Using a syringe, the former nurse squirts water into the can and the substance turns to gel. Quiet falls over the bedroom of the rural house as Joy and two other people fill their syringes and inject their hits. (We are using only her first name because she uses drugs illegally.)

Afterward, Joy fishes around in her purse for an appointment book, where she points to the 13th of the following month. She has an appointment with a doctor who can prescribe outpatient treatment, she says. She's ready to get help for her addiction.

Joy does not keep that appointment.

The road to here

Like so many people addicted to opioids in this country, Joy doesn't fit the picture most people have in their heads when they hear the words "drug addict." Joy was a nurse working in a hospital. She had three kids, a good job — she was even a Girl Scout leader.

Her addiction to prescription painkillers began after a back injury on the job. She says she never thought she would use a needle to inject drugs.

"This time last year, I had a home," she says. "I had a car, a house full of furniture, a lot of nice stuff."

Joy describes her big sectional sofa, cherry dinette set, appliances and gadgets like flat-screen TVs, game consoles and other electronics — most of which she sold to feed her addiction to Opana. She lost the house.

Now she's living in her mom and dad's living room. Her parents' house outside of Austin is a little one-story house with a screened-in porch, a barn out back and stacked firewood.

For a while, though, Joy says, she had nowhere to stay. She slept in a slide at a park at a local elementary school. Once she broke into an empty, boarded-up house just to get out of the rain.

"Anything could have happened to me there. I didn't care — I was just so high," Joy says.

Every day was about figuring out how to get money, how to buy a pill and get high. Joy says it was all about the feeling of first shooting up.

The grip of addiction

Joy ended up in jail, charged with visiting a place were people used illegal drugs. She says it's the first time she's been arrested.

"Never been in any kind of trouble in my life," Joy says. "You would think that would have been enough for me. No."

Joy got out of jail after a few days. One condition of her release: She had to wear a GPS monitor on her ankle. She also had a 9 p.m. curfew.

But she was withdrawing from Opana, and all she could think about was getting back to Austin and getting a pill.

"I was supposed to be home at 9 o'clock — and at 10 till 11, I still wasn't home, and they issued an escape warrant on me," she says. "I got home about 11:30 p.m. and my dad's like, 'You got a warrant on you!' "

She went back to Austin, cut off the GPS monitor and hid it in a bush. Police found and arrested Joy the next morning, slapping her with more serious charges since she'd violated the conditions of her release.

Joy spent more than 40 days in jail. She spent six of them in a padded cell on suicide watch after she used the underwire in her bra to cut herself. Slowly, she started to feel better. She started thinking she wanted to stay off drugs for good.

"I started going to church in jail and reading the Bible, and I thought, you know, this is not who I am," she says. "The more my head got clear, the more I just decided that I'm not going back to this when I get out of jail."

But that wasn't the end of it.

"The day I came home, I went and got a pill. After all that," Joy says. "I went and got a pill."

This happens to people who are addicted to opioids like Opana. Health workers and researchers say it's hard to stay off the drugs without some kind of treatment — ideally, medication and counseling.

Getting treatment

Finally, Joy says, something in her mind told her to stop. She decided to go to the clinic.

But the methadone clinic where she receives treatment is half an hour away from her parents' house, in a different county.

Austin is a town of about 4,300 people with what public health officials say are at least 500 known intravenous drug users. But it has no full-time drug treatment facility. The nearest inpatient treatment is 30 miles away, with at least a monthlong waiting list.

Like a lot of people in the area, Joy doesn't have a car — but she got lucky when she ran into a neighbor and he offered to take her to the methadone clinic. Every day, he came to pick her up and drive her there. Sometimes a friend loaned her the $15 she needed to pay for the methadone.

After a few days, she started to feel a lot different.

"I didn't think constantly about when I woke up, 'OK, what am I going to do today to get that quarter of a pill?' " she says. "I got up and like, 'I'm all right today. I don't feel too bad. I'll go to the clinic, get my medicine, come back home and help Mom around the house.' Gradually, my way of thinking started to change."

But she still faces cravings. She says even hearing the word "Austin" makes her crave Opana. Sometimes those cravings are too strong.

Two months into her methadone treatment, Joy picked up the phone and called a pill dealer.

"I had a bad day — a really bad day," she says. "And I called somebody up wanting a pill, and I knew I wouldn't feel the pill because the methadone blocks it. The guy [I called] was like, 'What are you talking about? You've been in treatment for two months. You're not going to feel this pill. You're going to get drug tested down there. You're going to fail it — for what? You're not going to buzz.' "

Joy got lucky again. Her dealer talked her down, and she did not go get a pill.

Starting over

Joy is still on methadone. She's going to counseling three times a week, and she sees her son every day after school. Sometimes he stays with her on weekends. She's talking to her daughters again, too.

Her nursing license lapsed while she was on the street. She had to take 24 hours of classes and pay a fee to get it reinstated, but now she's applying for jobs.

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Joy says she's worried about being around pain medication back at work. She says at first she might try to do office work such as billing or case management in order to stay away from temptation.

She's also saving money to get a car — and maybe even her own place.

"I have a bank account now," she says. "I have over $400 I've managed to scrimp and scrape since December, when I started taking methadone."

Joy says she wants to have a home again, where her son can live with her.

"That's all I can focus on right now," she says. "I never thought my kids would forgive me, my parents would forgive me. I thought my only way was to just commit suicide and let my kids be raised by their dad or my parents or whatever. And then I seen it — they do need me. They do still love me, and I'm still their mommy. It's time I did right by them again. I thank God that I have the chance to do that."

To hear more of this story, listen to Embedded. Keep up with podcast host Kelly McEvers on Twitter at @kellymcevers, and join the conversation using the hashtag#NPREmbedded.

Copyright 2016 NPR. To see more, visit NPR.
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